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Hi all --
When I was first diagnosed with TC back in July '06, my friend (bless him) immediately went out and got me this book: It's called "The Patient From Hell" by Stephen H. Schneider, Ph.D. The subtitle is "How I worked with my doctors to get the best of modern medicine and how you can too."
Dr. Schneider was diagnosed with a rare form of lymphoma and this book is an account of his journey. At first I thought it would just be a horror tale of what he went through. It's not -- there are moments that sound pretty horrific but it's a very uplifting read. I also assumed it would be a tale of ignorant and difficult doctors but it's not that either -- in the preface he states "This book is NOT anti-doctor. On the contrary, the team of medical professionals who treated me for my cancer at Stanford University Medical Center was dedicated, skilled, and caring. I'm still here to tell this story because they and their research collegues saved my life. But, as a patient, I also gained firsthand experience with the system in which these professionals must maneuver, and I learned that the bureaucracy and hidebound attitudes embedded in that system are far from optimal-- for doctors or for patients."
Overall, I'm recommending this book for this reason: It was invaluable to me to give me ideas about what questions to ask and how to stick up for myself during the entire process. I sometimes found that I was being treated in a "routine fashion" when, obviously, nothing was routine for me. And this book gave me the strength to push and push until I got answers that I was satisfied with -- to not only ask WHAT was involved with the treatment, but WHY. And to ask about alternatives at every step of the way -- to push and push until you get the kind of answers and the kind of time and treatment that YOU are satisfied with.
I just thought I'd throw this out there. There are a lot of people on this forum (and everywhere) who have never had to go through a long, drawn-out healthcare issue (or had a loved one go through one) and it can be so overwhelming. This book helped me and I hope it can help you, too.
When I was first diagnosed with TC back in July '06, my friend (bless him) immediately went out and got me this book: It's called "The Patient From Hell" by Stephen H. Schneider, Ph.D. The subtitle is "How I worked with my doctors to get the best of modern medicine and how you can too."
Dr. Schneider was diagnosed with a rare form of lymphoma and this book is an account of his journey. At first I thought it would just be a horror tale of what he went through. It's not -- there are moments that sound pretty horrific but it's a very uplifting read. I also assumed it would be a tale of ignorant and difficult doctors but it's not that either -- in the preface he states "This book is NOT anti-doctor. On the contrary, the team of medical professionals who treated me for my cancer at Stanford University Medical Center was dedicated, skilled, and caring. I'm still here to tell this story because they and their research collegues saved my life. But, as a patient, I also gained firsthand experience with the system in which these professionals must maneuver, and I learned that the bureaucracy and hidebound attitudes embedded in that system are far from optimal-- for doctors or for patients."
Overall, I'm recommending this book for this reason: It was invaluable to me to give me ideas about what questions to ask and how to stick up for myself during the entire process. I sometimes found that I was being treated in a "routine fashion" when, obviously, nothing was routine for me. And this book gave me the strength to push and push until I got answers that I was satisfied with -- to not only ask WHAT was involved with the treatment, but WHY. And to ask about alternatives at every step of the way -- to push and push until you get the kind of answers and the kind of time and treatment that YOU are satisfied with.
I just thought I'd throw this out there. There are a lot of people on this forum (and everywhere) who have never had to go through a long, drawn-out healthcare issue (or had a loved one go through one) and it can be so overwhelming. This book helped me and I hope it can help you, too.